Lilly’s story

Baby Lilly came into the world healthy. But within weeks, she was so sick she almost died.

When Lilly became unsettled and stopped feeding, her concerned mum took her to the local hospital.  Lilly was admitted for tests and taken for a lumbar puncture.  When a feeding tube was inserted Lilly had a seizure and just 30 mins later, she was fighting for her life having been resuscitated and placed on life support.

Kimberley, Lilly’s mum remembers “I just thought she had feeding issues and believed the lumbar puncture was precautionary, so when she needed to be resuscitated and placed on life support time just froze.  I didn’t feel anything, I didn’t know what was going to happen”.

Lilly was just 10 days old when her journey started and having been diagnosed with a rare auto-immune disease, epilepsy, severe anxiety, bronchiectasis and parechovirus, Lilly who turned six this year, has spent so much of her years at Queensland Children’s Hospital.

Lilly continues to suffer from terrible seizures at night, which may also contribute to her severe anxiety says Kimberley – “Her eyes shoot left and right, and you can’t reach her – she’s unresponsive. Her lips might pucker. Her breathing can be affected. She can be like that for five minutes or longer.

Despite six years of lumbar punctures, blood tests, anaesthetic and transfusions, sweet Lilly still smiles when she swings through the familiar doors of the Queensland Children’s Hospital. Her mum Kimberley says:

“When we have to come back into Hospital, Lilly doesn’t seem to remember the bad stuff. Amazingly she hasn’t been traumatized by what she’s been through there.”

Kimberley is so grateful for the cheerful volunteers – part of Patient and Family Support Services – who bring reassurance and break up dull days. She’s grateful for Lilly’s medical team who always make time to explain things. She’s grateful for music therapists who sing to Lilly while they’re taking blood, and for the pet therapy dogs, who come by to wag a friendly hello when Lilly’s in an isolation room and can’t play with other kids.

“The events we have attended at the hospital such as the Christmas carols, EKKA fun days, Telethon parties, Nova Bids for Sick Kids, have all created very special memories for us and are a safe environment for children with a weak immune system. The staff go to amazing lengths organising food, special guests and animals, activities and entertainment. The Santa photos are spectacular for children who have sensory issues, find it difficult to queue or are unable to spend Christmas at home.

We are also immensely grateful to the Foundation for funding research into new ways of diagnosing and treating parechovirus.  Parechovirus has not been widely researched, it is extremely rare and sadly at the moment there is no cure” said Kimberley.

Lilly still has a long treatment road ahead of her, but despite this and all she has been through Lilly is a truly amazing young lady.  Her smile lights up a room and her determination is incredible.  When Lilly puts her mind to it, she can achieve anything, including learning to swim and writing her name!

Story updated and details correct June 2020.

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